Lexi’s story exemplifies the absolute devastation patients and families go through as a result of being misdiagnosed for too long. In our article on Clinical Urgency of Diagnosing and Treating, we touch on how families often see up to eight providers before getting the correct diagnosis of PANS PANDAS. In the meantime, patients are placed on unnecessary psychiatric medications or in restrictive, costly psychiatric facilities, possibly causing more harm than healing. Today, Lexi is thriving with the help of her correct diagnosis and thus correct treatment. She and her family are still seeking additional treatments while they keep turning over every stone to help her recover. No child or their family should have to experience all the traumatic events they have. This is why awareness and education on PANS and PANDAS is critical.
Thank you to Lexi for sharing your story.
Trigger Warning: Discusses suicidality and harm.
May 23, 2022
First, a big thank you for your support!!
My name is Alexandria but my friends and family call me Lexi. I am 14 years old and I will be going to High School next year. I love horses, singing, Mythology,and I am a bookworm! Since the age of three, I have wanted to be a Paleontologist and even then I knew what it meant! Before I got sick I was an honor roll student and was grade levels ahead in Math and ELA. I could also speak two other languages fluently which were Spanish and Mandarin! I was a pretty happy kid who had my fatherʼs humor and my motherʼs wittiness! When I was 10 years old I lived in Omega GA and was excited that I had a talent show coming up soon. But then in January of 2018 thatʼs when my whole life would change….
On January 18, 2018, my mother took me to the doctor because I didnʼt feel good and had been running a fever. I was diagnosed with strep throat and the flu. I remember just wanting to be really close to my mom because I was very sick, so she let me be on the couch with her. And then things just got worse. I didnʼt feel like myself anymore. I became obsessed with food in more ways than one. I would sneak and hide food but not eat it or if I did it was a small nibble. I was worried that if I ate I would gain weight or the food was toxic. Some of the food I would get I would smear it on the walls and floors in my bedroom. I lost almost 30 pounds in four months. I was fearful and angry all the time. My parents took me to my pediatrician who gave me some medicine to make me hungry and diagnosed me with anorexia. My mom would buy me pediasure to drink and because I was counting calories helped me pick out certain foods. I didnʼt want to do anything, not even reading or singing which I loved. Then my handwriting got really bad and so did my math. It looked like a kindergartner’s handwriting which made me angry so I refused to write anything at all. One day at school, I told my teacher I wanted to kill myself. My Parents came and I had to be taken to my pediatrician and be cleared to go back to school. I had a counselor too but I didnʼt participate. Shortly aer I was cleared to go back to school I took a knife to the bathroom because I wanted to die. I didnʼt know why. I was miserable. My parents took me to the hospital and they sent me to a place where I stayed for four days and while I was gone I missed my talent show. I hated myself for that. But why couldnʼt I just stop?
They put me on medication for depression and other psychiatric medicines they thought would help. I was seeing a psychiatrist and my mom wanted another opinion. So, she took me to another doctor for mental health. But nothing seemed to help. I then ended up in another psychiatric facility for the same issues but this time I was hearing voices that were mean and telling me to hurt people and myself. I was 11. My mom took me to many places trying to get help for me. I was angry and mean to everyone around me and I didnʼt wanna be. I cried and screamed all the time. I wasnʼt ok. That summer I got mad at my sister and I hit her with a lotion bottle and she had to go get stitches in her forehead. I told my mom that the bad people told me to and she tried to get help. They told me I was too young to be hearing voices and dismissed me. I remember my mom crying a lot and my siblings were scared to be around me. Lots of changes in medicine and nothing seemed to help me. In September I threatened to kill both my siblings and chased my brother with a metal pipe. My mom called the police because she couldnʼt get me to calm down and that is what the Dr told her to do so that they could keep documentation. They arrested me and took me away to a detention center. I was terrified and screaming for my mom and angry.
The next day I went to court. I had been charged with three felony charges. My mom and dad came and talked to the judge and brought all of my paperwork and said they had done everything they had been told to do and they were worried sick about me. I spent a few more days in the detention center and then they let me go home. But because I had hurt my siblings I couldnʼt stay with my parents so my Mimi took me to her house. That didnʼt last very long because of my behavior. So when we went back in front of the judge they told my parents that they needed to do a CHINS case (Child in need of services). My mom didnʼt want to because they were going to take me away to stateʼs custody because they said they could help get me more treatment. My mom and dad were told by their attorney that if they did not cooperate they wouldnʼt let them have any involvement in my care and would take me away.
October 12th, the day my mother still says was the hardest day of her whole life, she had to take me to the DFS office and sign me over to stateʼs custody. She cried the whole way. I remember that. It was right before my 12th birthday and they took me to a group home in Macon GA that was almost 5 hours away. I didnʼt even get to see my family on my birthday that year. At the group home things got worse honestly. They had me to several doctors and therapies but nothing helped. My mom fought for residential treatment because thatʼs what everyone told her would be best. Insurance would not approve it. So my mom started doing a lot of research for places in the country where she could get me the best help. She found a place in Billings Montana. My parents got on a plane and flew up there to talk to them. My dad had found a job here and had an interview in Sheridan. They came back to Georgia and petitioned the court for this change on the basis that it would be in my best interest for residential help. The judge granted that and my parents made the move without me because the judge thought it would be best to come get me when they were established. They didnʼt like it at all but hoped for the best. Me on the other hand, they le me there and I was angry it was all I could think about. And then Covid happened.
My mother was finally able to get a hearing in June after being gone since March and she was able to get me in July. But a week before she came and got me, because my violent behavior had escalated even more, the place in Billings couldnʼt take me. My whole family was terrified. So my mom was able to get me into a place called St. Josephs in Wyoming after two more stays at WBI in Casper. I was still having hallucinations and I just wanted it all to go away. Self-mutilation became an outlet while I was in Macon but I promised my mom I wouldnʼt and I really did try no to. In my mind I was staying with my family. I didnʼt know I would be going somewhere else at the time and I hated her for it. Why was she always sending me away? Doesnʼt she love me?
I went to St. Joes in August of 2020 and it was all the same. Nothing helped. My parents would come down and visit alot. But I just wanted to go home. I was in restraints every day and sometimes 2 or 3 times a day. And again changing medications more than I changed the toilet paper. And all the while I keep hearing voices but now I cant talk about it at all because they are trying to say I have schizophrenia and sociopathic tendencies along with ODD etc… But help was on the way I just didnʼt know it. And I will probably never know all the things my parents did for me behind the scenes, especially my mom. But I do know this, she was just as miserable as I was. My mom found a video on social media about PANS/PANDAS and it took her to Pandasnetwork. She could check off all the symptoms she later told me and knew she had to get me tested. She had tried to piece it all together and began searching for anything she had around the time I changed that would link this together. And then she found it, she told me. A picture of me laying on the couch with strep throat and the flu. And a conversation with her friend about what the diagnosis had been. It really hurt my parents when they realized that out of all the places I had been no one had said anything to them about PANS/PANDAS. And that all of this could have been prevented.
My mom was on the phone day and night trying to find a way to get me tested and a Dr who would understand. Finding a Dr is the hard part but she did it. While she was working on this, the insurance company had sent my mom a letter saying that I had plateaued in my treatment and I had made no progress in my stay at St. Josephs. But my mom in all of her mountain moving had figured out why. And I remember her saying to me “Just hold on baby, momma knows.” I didnʼt know what she knew and it didnʼt make sense to me. My mom came and picked me up one day from St. Joes and said she was taking me to have lab work done. They took a lot of blood. And in a week I knew I would be going home for a couple of days because my mom wanted me to be with her for Motherʼs Day! So she just kept telling me to hold on and hang in there.
When I left St. Josephs I didnʼt know that I wouldnʼt be going back. But my mom was able to get my lab work to a Dr in Colorado and I had recently had mononucleosis among other things. And with my history they diagnosed me with PANS Disease. They put me on antibiotics for a while and anti-inflammatory medicine along with supplements for my brain and immune system also taking me off of psychiatric medications because they didnʼt help. And I started getting BETTER!! My mom and Dr explained to me what was wrong and how we could help fix it. I was also taking detox baths and I still do. I still get tics in my face and I have to try very hard every day to do my best. But sometimes I just feel wiped out and I get sick easily. I still have flare ups but my life is so much better now. My family isnʼt afraid of me anymore. I never wanted them to be. I have depression and anxiety about things and I still sometimes worry if my mom will leave me again. But this time she promised me she would never leave me anywhere again. I believe her. I had an amazing year in Middle School where my handwriting got better and I love to read again. The teachers and Mr Jones really helped me and they understood me. A lot of days were hard. I’m on an IEP so that they could give me extra support when I needed it. I even got to do drama club! I am grateful for everyone who helped me overcome everything that I have this year. They helped write my story.
I’m sure there is so much more my mom and dad could tell you about these last four years. And I thank you for reading my story and for all of your support in helping other kids like me. Please help us bring education and awareness to this disease so that other families can get help. Early intervention and treatment are important. And maybe with your help, no one else will have to go through what my family and I did. Now a quote from a song I sang at our spring choir concert. Itʼs called Invisible by a girl my age named Jadyn Rylee! “You give up on your future, if you give up on me.”
Lots of love, Lexi <3